Young

I mean no disrespect to the many brave, selfless and infinitely kind people who subscribe to this board, which is truly a blessing. However, and this has nothing to do with you but with the medical profession, there is a deep seated problem and that is the matter of age. I first started getting really ill when I was 36. I am now 50 and soon to die. I firmly believe that this is something with which some of us are born and which is triggered by events to take it to the next phase. All I am trying, not especially articulately, to say is that PSP can bite at any time and the British authorities don't understand. While I received an official diagnosis in weeks in Hong Kong and from private practitioners in the UK, the NHS will still not diagnose me - largely, it seems, because I am "too young" (the baby face doesn't help). So I don't get any care or financial support. It is a disgrace. I don't get cross - perhaps the best feature of my personality - but as my life ebbs away in indignity I am bloody cross now. There, off my chest. Sorry to have bothered you.

33 Replies

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  • Sounds like you posted as timurinsaneman when you was on here before about 2 months ago.

  • Yes I did. What of it? I am certainly not going to engage in conflict on a site intended to heal wounds, not exacerbate them. Are you trying, in your inarticulate English, to start some sort of fight with a dying man? I pity you

  • Don't try to contact me again, creep

  • We are all dying, Tim, but certainly everyone is concerned about you with the dire circumstances you describe. I take it that the miraculous benefits you experienced with that vitamin supplement you were taking were short lived. May I ask how long the benefits did last? Was the decline very rapid? For you now to be confined to bed with no help at all, unable to go to the pub for fear of being conspicuous, as you mentioned on another post, must be terrible. How are you being fed? I'm sure folks here would like to help you in some practical way, make phone calls to your local agency perhaps on your behalf. Meanwhile, I am also wondering if, articulate as you are, you can tell whether the emotional volatility you display is a symptom of the psp. I'm sure that has not lessened that social isolation from which you suffer. You really should get some support, if only for your brother's sake, don't you think?

  • Easternceder i think the supplement must of only lasted a couple of months because when the good professer was advertising them a couple of months ago he was able to walk and talk etc. I think it was in that time he became a chef.

  • You are horrible. I am going to report this

  • Please do

  • I did. And, by the way, before I was ill, I actually was a professor. Just go away

  • You are right. I experienced a very short lived reprieve in this nightmare from taking B vitamin supplements. I wasn't advertising anything, I just wanted to share something that might be helpful to other sufferers but received so much abuse for no reason that I kept off this site, which is meant for people like me - and I am a PSPA donor - for months just to receive yet more abuse. I am on my own and dying. I don't want any sympathy, I just wanted to help out if I could. Signing off. Good luck to all of you.

  • Sorry, Tim, if you didn't want sympathy. That is not what I would have guessed from your posts. You did say you had multiple doctorates. May I ask what were your fields? Really, I am interested.

    I think you are mischaracterizing your former experience here. People were, of course, excited about your positive report of the supplement, as people here are desperate for good news. They were advised to be cautious and to seek medical advice by the administrator and others. You became verbally abusive and insulting. The conversation ceased when you stormed off. The conversations are available on this site for anyone to review.

    No one wishes to deny the comfort of this community to anyone, and your descriptions of your isolation and suffering have elicited much sympathy, which you now say you do not want. So, how can we help?

    I must suggest that an apology to jzygirl now would seem at least a minimum gesture for a return to civil engagement, however. And perhaps we could then ignore the earlier episode from here, with that.

  • I never insulted anyone and I don't "storm off". People were extremely rude to me. That's what happened. All I did was suggest that a well formulated vitamin B complex might help - it is clinically proven, so obviously terribly wrong. I frankly think having the disease is somewhat worse than caring for someone with it and that's from where all the spite derives. I spent my teenage years, 16-18, caring for my father who died terribly young from initially kidney then widespread terminal cancer so I can see the situation from every angle and it isn't pleasant. I am cancelling my connection with this site. I will obviously still donate to PSPA as nobody deserves this - but nobody deserves to be abused either - on a charity site! I am miserable enough as it is. Keep well.

  • To say what you do proves, I think, that you lack understanding of both the emotional dynamics of a bonded couple and the toll this takes on the caregiver. Certainly it is very difficult to bear the disease with grace, which is why we so admire those who do.

  • I suggest you read your first posts Tim, we were not the ones who, I thought , denied you access to this site. Remember what I said before, read your words ask yourself if you would want someone to talk to you in the same way, and then rewrite.

    We all deserve this site, even you, if you can be civil.

    Your Choice Dr!

    AVB

  • Jurisprudence and physics

  • Oxford, Rome, Barcelona

  • No

  • Still not cancelled?

  • I really really feel for you and if I can help with anything I will. My husband has PSP and falling and all the regular symptoms but I am thinking of you so much

  • Helen, you are an angel but I am too far gone. What time I have here is for others and I won't stop. Pray for me once in a while.

  • Helen

    I am now trapped in bed but there are things I can do. Let me know.

    Best,

    Tim

  • Tim i feel you need to call social services to help you, if you are dying you need support .

  • If I am dying, there is only one support I need. X

  • Not again!

  • ?

  • Follott I'm afraid so hun.

  • We all are. But you are just plain nasty, "Hun"

  • Stop it, Tim. Get a grip.

  • I have a great grip. I hope you come out of this OK but I have no room in my life for this. God bless

  • Oh so sorry,my husband PSP is 80yrs old and while we moan and groan we do remember K Swankey often to realise we were having hols abroad and really enjoying life at his age and now we know you we will think of you too.

    Glad to have your company though sorry for the circumstances.If only they could find something you could fight this disease just to feel some hope.Much love to you P

  • If your chap can eat, that's the best. A glass of wine doesn't hurt. And a really good night's sleep. Mine kicked in at 36 so I have thirteen years' experience and, sorry to say, it doesn't get better. But there are many lovely people who do care and can do something. The PSPA in the UK is excellent. I'm fine, just get a bit down from time to time. I wish you well and sorry for rambling.

  • NOW TIM THATS BETTER WE ALL HAVE ENOUGH TROUBLES TO GET ON WITH WITHOUT ALL THIS BITTERNESS GOING ON BETWEEN OURSELVES SO HOW ABOUT YOU FORGET ABOUT DYING\ FOR A FEW MOMENTS AND BECOME A NORMAL HUMAN BEING WHICH YOU CAN BE JUDGING BY YOUR LAST MAIL AS EASTERN CEDAR SAID WE ARE ALL DYING FROM THE TIME WE ARRIVE IN THIS WORLD SO LETS ALL MAKE THE BEST OF IT SHALL WE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER AND YES I AM DYING TOO BUT NO PROBLEM

    TAKE CARE

  • Brilliant, Mr. jones. Thanks for your gracious and humane words. I can see this guy is suffering, if only he could be open to the kindness that is here. Anyway, welcome back. How was your trip to the coast? We had our first snow today, just a flurry in bright sunshine with red and yellow leaves swirling about in a flirting breeze under a turquoise sky. Fire in the wood stove and stew in the pot. We are content here in New England. Best, Easterncedar

  • hi eastern cedar and mr c I hope you are both ok and doing well mates did you receive my em about the casino and the fall had in there mates im not sure if you got it or not so much has been going on matey at the moment I hoped mr c has been ok and no major problems

    as always your friend peter jones q.l.d,australia

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